My advocacy efforts spur from my own personal experiences as a patient with Ehlers-Danlos Syndrome, Chiari, MCAS, Dysautonomia, Hypokalemic Periodic Paralysis, CRPS, POTS, and several other rare & chronic illnesses. While serving as Miss Frostburg, I use my educational platform, "But You Don't Look Sick" - Making Invisible Illnesses Visible, to raise awareness about invisible illnesses. I have shared my story (translated into 8 languages) with the world - most knowing me as the beauty queen with a 25" scar down my spine. After 10 brain and spinal neurosurgeries (due to EDS) I am a living example of how to live beyond your illness and beyond any obstacle that life throws your way!
I’m a Patient Leader